Originally published 4 January 2019 on the NIHR Imperial BRC Patient Experience Research Centre (PERC) Blog.
I am a recent mature graduate from London South Bank University, where I studied a degree in ‘Health and Social Care: Administration & Management’. Over the years I’ve managed to accumulate vast lived experience from being a service user in healthcare, both as a patient and family member. I have written about what having a brain injury has taught me here.
As part of my course I had a placement with the Patient Experience Research Centre (PERC) at Imperial College London, who promote participatory approaches to healthcare and biomedical research. They advise and support researchers at Imperial to do PPI (that is Patient and Public Involvement, not payment protection insurance!). My knowledge and experience of public involvement within healthcare and research was then put into practice during the placement.
Here are 9 things I learnt about Public Involvement.
(1) Involvement can take place in both services and research. During my degree we studied the fundamentals of public involvement within Health & Social Care services. Involvement in services may be easier to get your head around as a lot of the time it is possible to imagine how a suggestion from someone can lead to a change in service provision and an improvement made.
(2) Involvement is different from participation in research. Patients and the public are actively involved and contribute to the research process as advisers and on some occasions as co-researchers.
(3) Public Involvement can bring all sorts of unexpected outcomes to your research. Having a conversation with someone who has first-hand knowledge of a condition may lead to new directions for research. Researchers may find that the idea they were interested in researching is not needed or just needs a little tweaking to make a huge difference in people’s lives. You’ll get a different perspective and new ideas!
(4) PPI can take place at any stage of the research cycle. While it is better to start as early as possible, ideally at the start of the project, starting at a later stage is better late than never.
(5) We should talk about seldom-heard researchers, not seldom-heard publics. Public involvement should include activity to reach out to “seldom heard voices”. In many cases finding partner organisations who are often already in contact with a particular community, especially minority or vulnerable groups, works well. There are some great public groups already out there, such as VOICE which will support bringing researchers and the public together.
(6) Service users should sit on interview panels for new staff. I participated as a service-user ‘interviewer’ for applicants for some of the Health and Social Care courses such as “Diagnostic Radiography and Radiotherapy”. The interview process was set up as a multi-point interview, broken down into 6 questions (all relating to the NHS core values) asked at different stations with the same person asking a particular question for the duration of the session. It was really interesting to see how my opinion mattered. This echo’s the Francis report (2013) which identified that, nationally, the NHS focused too much on processes, instead of people. The report highlighted that the NHS needed to focus on value-based recruitment to enable them to access values, attitudes and behaviours before employment or acceptance on healthcare related courses. This would enable the NHS to become more compliant with patient-centric and compassionate care.
(7) Expectations of a lay person involved in research are important. What is expected of you as a lay person taking part in public involvement for the research activity? Are the demands by the researcher reasonable? Are roles and responsibilities clear? Clarifying these points between researchers and lay people may simplify matters in the long run. As a patient you can make suggestions to the researcher to help them understand your condition so there is less confusion while working together.
(8) Public involvement is fundamentally about people. Involvement within research can not only increase your own knowledge further about the specific area you are involved in but will also help develop your personal skills, such as your ability to network with researchers, other professionals and members of the public. This may also help the public who are participating in the research study meet other members of the public with similar conditions. Depending on the lay person/service user’s mobility and health condition this type of involvement may give that person an added purpose within their life and add to their social network and contribute to helping their mental health and wellbeing.
(9) Co-production is the future. During my placement with PERC I took part on their two-day Co-Creating Innovation Solutions for Health (CRISH) course as a patient representative. CRISH brings together various stakeholders to learn how to: engage, create, co-create and co-design innovative research and healthcare projects. The group I worked with had a researcher whose PhD was focusing on lower limb prosthetics, in particular the pressure points within the prosthetics. We brain-stormed ideas at different stages of the research cycle and how to collaboratively produce proposals in a short space of time such as a ‘hackathon’.